Loving someone with a chronic illness

When Matthew’s health first got really bad I went to the internet to try to find out how people cope when their lives are devastated by chronic illness.

I found online support groups for younger people living with arthritis and by reading those posts I came to understand more about what it was like to live with a painful, potentially degenerative disease.

I also learned that there were people who were much worse off than my man, people who had lost most of their mobility and could no longer care for themselves in even basic ways. People who were younger than him.

Truly, you never think it’s going to happen to you, or to someone you love.

One thing I noticed in those posts was that there seemed to be only 2 categories for people’s partners. They were:

  1. Saints who did everything that needed to be done and never once complained; or
  2. Jerks who left.

Even then I knew I wasn’t either of those things.

Anyone can pull off a short-term sainthood. 

When your partner gets pneumonia or breaks a leg or completes a successful cancer treatment.

But when your partner is more or less debilitated for years and you are left doing everything? Every single trip to the grocery store. Every time the bills need to be paid. The lightbulbs need changing. The kids need clean socks. Or are hungry. Including when you’re sick. And have had the crappiest workday in all of creation.

The reality is that until we figured out (slowly, by trial & error & radical upheaval) how to live, I felt mostly harassed and cheated, and I’m pretty sure it showed.

So I know for a fact that on the continuum between the saints and jerks are the harassed. And those that are feeling sorry for themselves.

And the desperately worried.

And the devastated.

Jerks

Over the past 5 years, I’ve thought a lot about what chronic illness does to relationships.

I’m now very aware that debilitating illnesses happen in real-life, including in real-life marriages. Loving marriages, cheating marriages, bored marriages, passionate marriages, miserable marriages and variable marriages.

Matthew and I happened to have the intensely loving & passionate variety, and I can tell you that if it can almost destroy ours then I don’t know how the other kinds survive at all.

SaintsSimone_Martini_-_St_Catherine_and_St_Lucy_-1320 25

Of course, it’s not just the partner who is required to be saintly.

The person with the chronic illness is expected to find ways to ‘manage’ their condition, and the expectation is that they will do it with a minimum of fuss and a great deal of quiet courage.

Not only are people supposed to manage their illness in an unobtrusively heroic way, everyone gets bored of hearing about their pain.

If not bored then uncomfortable.

Or skeptical.

Ultimately, no one particularly wants to hear about it.

(But you can be sure they will suggest a random remedy that will solve the problem: Marijuana! Lasers! Castor oil!)

Real-lifePetra & Matthew

So. Two ordinary people in a real-life marriage. Under tremendous stress. For years. Maybe forever. One of them in constant pain. Both required to begin their non-optional non-stop intensive training for sainthood.

If the relationship is going to survive.

Both will fail their sainthood exams on a regular basis.

While other people alternately forget, or expect that they will carry on as usual.

That’s the deal.

Maybe this is the post I hoped I’d find when I first started to try to figure out how to cope.

10 thoughts on “Loving someone with a chronic illness

  1. It’s hard enough parenting a sick child. Having a sick partner would be (is, for you) so much harder, I imagine. Good for you (both) to be managing, and the very best of luck.

  2. Thank you for putting into words what my husband and live everyday. My husband and I just moved across the country from everyone we know and love in the hopes that his pain and health in General will be better in a warmer climate. It is helpful to know that there are people who understand the life we live.

    1. It’s immensely challenging and it’s easy to feel very alone. We moved a number of times in the hope the Matthew’s health would improve. I hope the warmer climate will make a difference for your husband! We dream of Hawai’i!

  3. You are very courageous because you are doing everything within your power to improve the outcome. You are creating hope and it’s noble and important to pursue that. It also seems very valuable to share those feelings. Screw the whole stiff upper lip thing.

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